General
Debunking transplant myths
May 3, 2022
in General
it seems that recently everywhere I look has had new storylines surrounding transplantation. The most 2 common viewpoints I see are 1. The inspirational, heroic transplant recipient (who has a very unrealistic recovery, there is some main connection between the recipient and the donor/donor family and you leave feeling warm and fuzzy) or 2. Thriller style psychological involvement (avenging death, someone getting the heart of a former serial killer and then going crazy, remembering the recipient’s life to an exact and using it to solve a mystery)
what transplant myths have you seen recently that need to be debunked?
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Hi! I’m not sure if you mean in TV or Film? Or News stories! Either way, too much of one and not enough of the other. (I will leave it to you to figure out which!😉)
3 years out from Liver Transplant, and I am still mentally bouncing around the reality. I didn’t know I was “sick” and went from a normal Wednesday, to 2 days later in a coma and when I awoke 4 days later, being told I needed a transplant. 8 months later, I got a Liver. I am still processing the diagnosis yet I had my transplant and my numbers are good!
so, any portrayal of Transplants at still surreal to me. It is all so amazing that I (we) are given a new chance!
just give us our due. (Media) Not everyone can be a transplant warrior.
I want there to be a Marvel movie or series about Us!
The Transplantinians, from Planet Donoropilis
Transplant Patient
Congrats on being blessed with the ♻️ #giftoflife ✅️ @Marklive . I completely agree with you, not everyone can be a #transplant #warrior.
@AliEm14 - indeed, the scenarios you mentioned exist and are complete myths. That's certainly not how most people's journeys are. Of course, I shouldn't say it doesn't or can't EVER happen that way.
That said, there are many other myths about how transplants actually take place. We all know that Transplantation is a miracle & takes a whole bunch of things to line up perfectly for it to happen. Beyond that, post-'transplantlyfe' is dependant on a host of other critical success factors to honor the #organdonor, such as: 💯 compliance, great support, good (healthy & hygienic) habits & much more. All of which are relevant and important for great outcomes.
There are unfortunate & recurring myths / themes in movies & other media, specifically around how organ donation really works. In the 🇺🇸, there's a National waiting list & there are very strict rules & algorithms in place to prioritize & allocate organs from deceased donor heroes to patients waiting for a live-saving transplant. Often, in movies etc there is dramatization & sensationalism. For example, it is completely unethical & impossible to make a patient 'jump ahead' the wait list to receive an organ ahead of others.
For an example, please do
watch a fairly recent movie titled, "The God Committee". (*Link to the trailer is posted)
We could probably have an entire discussion series to review movies like this & identify many mis-leading myths about #Organdonation & #Transplantation!
Transplant Patient
I love that you brought this up @Sdey0522
there are so many things that go into a successful transplant, and it’s different for everybody. While these portrayals can highlight one persons story, every transplant journey and recipient are so unique, which flows into things like what compliance looks like for each one of us, what being in good health looks like… it’s all so unique!
I feel like a lot of portrayal is done for shock value, or dramatization. It needs to be something that catches attention and evokes emotion. Which I’m sure everyone’s journey had dramatic and shocking moments to some extent, but it’s only a snapshot.
Myths that are amplified through tv/movie portrayals really bug me. Especially the ones around organ offer decision making. I think they do hamper organ donation advocacy efforts; had plenty of sm/irl discussions sharing facts with people who are hesitant because of what they've seen on the screen.
Transplant Patient
@AliEm14 - agree with you.
@DonnyC - 💯!! The messaging needs to improve. At the very least, there should be 'disclaimer' type text to inform the audience about the facts vs fiction.
I would be up for a collaborative 'petition' of sorts directed at the powers that be in Hollywood! Anyone else? 🤔 - there's strength in numbers/voices.
Transplant Patient
Thanks, @JimGleason_TRIO
TRIO does good work for the transplant community. 👍
I'm in love with this discussion. I like the idea of using the media's view as a starting point for a conversation. But, I feel like few people seek out that alternative view, and there's this conversation about how medical professionals don't take care of the transplant donor.
A friend recommended an older book and I'm just now reading it. Please no spoilers, because I'm still at the beginning, but I'm just so annoyed reading it. It's My Sister's Keeper. The main problem I'm having at the beginning is a 13-year-old thinking she is going to be forced into giving her sister her kidney. As far as I know, they won't even allow that until you are 18. And no doctor is going to pull a perfectly good kidney out of a child if the child refuses.
Again, I'm still at the beginning, so hopefully they pull those parts out of the story and help with the misconceptions.
This is a great discussion.
Interesting comment on Donate Life Hollywood or the TRIO organization consulting on storylines and issuing public clarification when storylines are not really accurate. Any info on advisory roles for recent productions? How does TRIO or Donate Life communicate this to the general public? The transplant community is siloed and it’s difficult to channel this stuff outside our own network. It seems like we’re always just speaking to choir.
Quick comment on the “average transplant experience”. I’m not certain what that is. Or what is deemed normal recovery or a satisfactory experience. The one thing that has been consistent is that each experience is different and that we definitely do trade in a set of problems for another. One of the 2 or 3 major themes of conversations I’ve been a part of for the past few years center around how the new set of problems have a real impact for quality of life for a large number of recipients and how to best manage them.
I can foresee that The God Committee could cause donor families to have second thoughts about their loved ones wishes. I know there are rules and steps to follow but do others know this. Just the trailer bothered me.
Will have to look for this God Committee movie. Hadn’t heard of it before this thread. From the comments so far, it seems like a doozy.
Transplant Patient
@DonnyC , the movie is available on Netflix, if you're a subscriber.
in my personal experience the biggest myth i encounter, which is usually derived from tv/film, is the notion of a corresponding personality transplant in addition to your organ transplant. as in, have you noticed or picked up any habits that were specific to your donor?
a close follow up is the idea of a return to normalcy or baseline health equivalent to healthy, non-transplanted individuals.
I love reading these!! Thank you for being real
Transplant Patient
I love this discussion. In my view the media picks up on the most interesting storylines, which are also usually the most rare. But that also happens with every other people group and storyline out there, and far more often with complex issues. People are attracted to things they don't understand in general, organ transplantation being one of them.
@DonnyC I would echo your question of what even is an average transplant story? My story would have been deemed rare and complicated, but it was my story, its what I know. We can learn things, but at the end of the day we can each only speak on our own lived experiences (you are only the expert on your own life). I tend to agree more with @JimGleason_TRIO 's perspective of just share your story and counteract whatever is out there. Media's job is to get people talking, our job is to then share about our own unique lived experiences. I'd love more diversity of experience representation in media (In all kinds of ways, not just transplant) but even then it will be different because we all have different experiences. My opinion is media should exist to entertain, to potentially start conversations, but it should not be a portrayal of what is average.
@Shelbycreates i haven't read that book since my transplant (I read it when it first came out, and watched the movie) but when you finish it, you should post about it and break it down. I think Jodi Picoult is a great writer in general and, again, so much nuance is brought to this conversation and everything she does
Transplant Patient
More food for thought: What does everybody think about Frankenstein? This is one of the most common literary examples I hear when I mention transplantation in media. It's not an organ transplant book, nor is it even currently accurate as it was written so long ago, but it does have links to transplantation and seems to be what people think of when they think of modern day organ transplants.
Someone reminded me recently of one of the first successful heart transplants done, in which after waking up the patient said "I am the new frankenstein" (whether this is accurate or not is still up for debate) and I wonder how having this narrative affects our own personal experiences and how others may interact with us
Hmmm...never thought of Frankenstein before as an organ transplant story> I will be chewing on this for a while. Thanks!